Hypospadias and Epispadias Association, Inc

Tag Archives: disorders of sex development

DISCLAIMER:The following material is provided for educational research purposes and is not intended to replace medical advice. The contents and sentiments within this post and the attached “Hypospadias Treatment Decisions” paper by Bonnie Steinberg do not necessarily reflect HEA’s position on this topic. Please consult a licensed urologist for medical advice.

Dear parents and friends of babies and young boys who were born with hypospadias or epispadias,

If you are a new parent, or an experienced parent, you may be exhausted from juggling all the things that you need to do—adapt to a new baby or adapt to parenting a baby with a difference you may never have heard of before. You may be working and parenting and not sleeping through the night. You already have more than enough to do. In the middle of all this, you might be making the decisions about whether or not to agree for surgeries for your baby or young child.

I wrote this paper as a master’s thesis in bioethics. And I wrote it because I believe that in order to be more fully informed you would do well to have the information that it contains as you make these important medical decisions. This paper contains my research and does not reflect the views of the Hypospadias and Epispadias Association (HEA). It is for educational purposes.

You already have more than enough to do and think about. The decision about surgeries is a very important one. It would be good to take time, adapt to your new baby, and perhaps begin to take in some of the information that I present. The paper is long and full of new information and sometimes hard to read. I know. But until I rework it, here it is.

The central focus is on the medical information that you might need. Are the surgeries elective or are they medically necessary? Do the surgeries solve the problems that concern parents? What are the surgeons saying to each other? Because my focus is on the medical information that you might want before you make a decision, there are some issues that are of great concern to parents that don’t really get addressed. Most important might be the questions of your son’s psychosocial needs and well-being. How do parents deal with the larger issues of raising a boy with a genital difference—so that your son will be self-confident and feel well loved and respected and able to handle many of the situations that arise in growing up?

If you have any questions or want to contact me, please don’t hesitate to email me at bonniesteinberg2@gmail.com.